CONFERENCES

OIFE in Barcelona

Today OIFE is represented by vice-president Dace Liepina at the 28th EURORDIS Round Table of Companies Workshop in Barcelona – “A New PARADIGM of Meaningful Patient Engagement in the Life Cycle of Medicines”. The event is an annual seminar for representatives from industry (pharma) and from EURORDIS and their member organizations. This year, the workshop…

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CONFERENCES

The Voice of People with OI

Do you want help us establish the voice of people with OI? OI Community Sounding Board The organizers of the conference Quality of Life 4 OI in Amsterdam are assembling an OI Community Sounding board (webinar) to test the key messages from the OI community, which will be shared during the Amsterdam conference. This is…

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CONFERENCES

Join Quality of Life 4 OI!

Join the conference Quality of Life 4 OI, taking place from 22-25 November 2019 in Amsterdam! The Conference organized by Foundation Care4BrittleBones together with OIFE, OIF, ERN-BOND and BBDC will provide a platform to engage on clinical practice and research aimed at increasing quality of life for people with OI. The conference discusses topics like…

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CONFERENCES

OIFE at China-Dolls Conference

From August 3rd – 6th 2019 the Chinese OI society (China-Dolls) celebrated their 10th anniversary in Yantai in the east of China. They organized a medical conference two days before the meeting. During this conference three international experts (Dr. Frascini from Italy, Dr. To from Hong Kong and Dr. Semler from Germany) gave lectures and…

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CONFERENCES

3rd Ibero-American congress on OI

There will be a big Ibero-American congress on OI in Quito, Equador from October 16th – 18th 2019. There will be international lecturers from Canada, Spain, Colombia and Equador. Target group is both professionals as well as people with OI and their families. More information to be found in the conference webpage: https://www.feoi.org.ec/page/congreso2019

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ADVOCACY

Rare2030 & OIFE at EURORDIS events 2019

Holistic and Integrated Care by 2030: EURORDIS Membership Meeting 2019 in Bucharest By Dana Andrei, OIFE Delegate Romania & Rebecca Tvedt Skarberg, OIFE delegate Norway and ERN BOND ePAG Black Pearl Events The Black Pearl Events took place on the 12th of February and Rebecca Tvedt Skarberg and her husband Knut Erik were invited to…

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CONFERENCES

Symposium on stem cells & OI in India

Written by Eva Åström, member of OIFE Medical Advisory Board OI symposium in Vellore India The Centre for Stem Cell Research at the Christian Medical Collage in Vellore, India arranged a two day symposium on OI and stem cell treatment on the 6th – 7th of February 2019. The aim was to provide a platform…

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CONFERENCES

Patient Outcomes

Many people & projects are talking about patient outcomes & outcome measures these days. Today at the #iccbh2019 there was a poster presentation from Australia which reported that 1782 different outcome measures were used in 19 different trials about OI. This big variety makes it challenging to compare research across borders and between projects. We…
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CONFERENCES

New European Rare Bone Network

Yesterday OIFE was happy to co-host the establishing meeting of a multistakeholder rare bone network together with Hypophosphatasie Deutschland e.V. and ANDO Portugal with the kind support of the European Calcified Tissue Society – ECTS and the ICCBH-conference. The background for the initiative was among others connected to OIFE’s project ‘A stronger BOND between us‘.…

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